Hi I am new to this forum, I was diagnosed in dec 2011 by mistake, my doc sent me for physio of suspected RA, Physio didn’t agree sent me for MRI, I have a 10mm herniation, I was offered surgery but turned it down due to recovery time (I have a disabled child so I can’t be ill). I have a lot of weakness pain and numbness in my right arm and hand also right hip, I would describe it almost as my bone hurts in my leg also, NS said not related but I think it must be as worse when my head is bad, does anyone else have symptoms like this??? It wakes me must several times at night and my hand is dead when I wake.
Thanks for reading Al
I have had intermittent lt arm and leg numbness, weakness, and what I refer to as the creepy crawlies for about 15 years. I was treated for the last 10 years as having psoriatic arthritis. Late last year I became very ill and the Chiari was discovered. I had surgery Feb 24th of this year. Unfortunately, I am still have the symptoms occur due to the nerve damage caused by the brain herniation. My surgeon informed me that nerves take six months to two years to heal. Although I still experience it from time to time, it is significantly less than prior to surgery. So I would have to disagree with Chiari not causing those symptoms. I am no longer being treated for autoimmune arthritis. The damage to my spine/discs was caused by insufficient CSF flow. By the time I got to the operating room, I had a drip of CSF from my head to my spinal column instead of a flow.
It is absolutely the Chiari. My pain is all down the left side of my body. It is very common to have pain with Chiari on one side. I would give surgery a second look. It's not a cure but it does help stop or slow the progression. A 10mm herniation is significant and because your CSF flow is decreased and you have pressure built up in your head, damage is being done right now to nerves and muscle and possibly to your brain and brain stem. Everyone is different and you should get Cine MRI and see a NS that knows about Chiari. You really need to see a specialist and find out if you should wait or not. People will step up and help you if you ask. I have a Type 1 diabetic son who's on the Autism Spectrum it's very difficult but you need to take care of yourself too.
Been to doc today as feel head a lot worse he has doubled my amitriptyline and if no better in a few weeks I will go back to see NS, I do feel I will end up having surgery but my daughter is severly disabled and is about to undergo a colostomy on top of all her other problems, I have to get jess through the next few months then think about me.
Thanks again for replying Al Xx